September 18, 2011

For an hour every Saturday morning for the past two months, Schuyler has strapped on her shin guards and pulled on her jersey, and joined her friends on an indoor soccer field in Frisco, Texas.

Schuyler's team is the Wizards. They've been largely the same team for two seasons now, and despite their record on the field (they lost all of their games except for two, which were ties), I hope they stick together next time, too. There are mostly small players on the team -- Schuyler was probably the biggest -- but they played with a lot of heart and their coaches really worked hard with them while remaining positive the whole time.

We've toyed with the idea of trying to get Schuyler into a neurotypical soccer league, but we went and observed some of them practicing, and it was daunting. I don't know about your town, but in Plano, league soccer is intensely competitive. I talked to some people who knew a little about those leagues, and they all gently suggested that our instincts were correct and Schuyler might just get eaten alive.

So she continues with Miracle League, but on what they call the Unified League. These teams are set aside for kids like Schuyler who are ambulatory and don't need a buddy to help them out. There's a regular league for kids who need a little help, and another for kids in wheelchairs. It's not a perfect division of the kids, as some of the other Unified players are much older and much MUCH bigger than the other kids, but it still mostly works for the kids.

Schuyler loves to play soccer. She dances on the field, and she gets mad at the big kids and gets in their mix whenever she can. She gets frustrated when her team misses a goal, and she celebrates wildly when they score. She knows that her teammates are different and is kind and protective of them. She knows that the players on the opposing team are different, too, and she's mostly kind to them as well, aside from a certain amount of posturing. In short, Schuyler plays like it means something, and yet at the same time she plays like it means nothing more than the fun of play. I'm sad that the season is over, and I can't wait until it starts up again this fall.

Sometimes I come here to talk about big things. And sometimes? I just want to tell you that my kid plays soccer, probably like most of your kids, and I'm proud of her for all the same reasons you're proud of yours, as well as for all those other monstery reasons I choose not to acknowledge just this once.

September 8, 2011

I've had a piece of music in my head for a few weeks now, and I thought I would share it with you tonight because, well, it's on my mind. That's all. Sometimes that's reason enough, you know?

I poked around online and found a performance on YouTube, of about four minutes of music that is, I do believe, the most beautiful music I know. That's really true, and it's not small praise, either. Not to be too arrogant about it, but I know a LOT of music. Furthermore, my taste often runs toward this sort of big, weepy Romantic stuff, meaning that my head is full of a lot of Rachmaninov and Vaughan Williams and Mahler and Schoenberg (the Gurrelieder Schoenberg, not so much the "I hate you, audience! You must suffer now!" Schoenberg). And yet it's this little four-minute stretch of this little-known symphony that gets to me, and gets to me every single time I hear it.

Most people know Josef Suk, if they know him at all, as a composer of fairly light stuff. His name is funny in a middle-school-boy kind of way, and he looked sort of like a chubby little Hitler. (Not really his fault; he died in 1935.) But his Asrael Symphony was different. It was named for the Islamic Angel of Death, cheerfully enough. Suk began the symphony as a tribute and celebration of his late mentor and father-in-law Antonin Dvorak, but as he was working on it, his beloved wife died, and Suk was plunged into despair.

Buried in the middle of this gigantic, heartbreaking symphony of pathos and pain are the four minutes that I'm sharing with you. (There's more after that four minutes, and the whole symphony is fantastic. You could do worse than listening to the whole thing.) And if I played it ten times in a row tonight, I'd find myself teary-eyed ten times.

The thing is, for some reason I associate Schuyler with this music. When I listen to it, I hear pain and I hear longing and love and regret, sadness and joy stuck together like red and blue Play-Doh, forever infused but not assimilated. I hear these emotions all at the same time, as if the yearning and the love is answered by the regret and the pain mid-phrase. All those emotions, all swirling together, not mixing, not resolving, but just existing together. There is sorrow, and there is happiness floating on top of those sad waters. Or maybe it's a sad boat bobbing on the surface of a happy sea.

And now that I spell it out like that, suddenly my association with this music and my sweet, mostly joyful but sometimes sad, broken but perfect Schuyler isn't so inexplicable after all.

September 4, 2011

It's an odd thing, to be the guide and protector of the strongest person I know.

Schuyler attended a band event this week, held at a local video arcade/mini-golf/go-carts place. The kids were set loose with a cup full of tokens and free reign over the place. It was a nice gesture by Schuyler's new band director, and the kids seemed to have a good time.

There were a number of parents in attendance. We went because no one, not us and not her band director, was certain how Schuyler would do in a setting like that. It felt a little early to just throw her into the mix. But after playing a few games with her, we held back, went to another room and just waited. We watched her try to step up, and to make connections.

She tried. She was awkward, but she tried. After wandering the arcade for a while, looking for someone to play with her, she made her way to the laser tag room, where a bunch of her classmates were being divided into two teams. I watched her disappear into the dark.

When she came out later, I detected a change. And here's the thing that's hard to explain, and yet it's maybe the most important part. When Schuyler came out of the laser tag room, she wasn't defeated. She came out alone, and she didn't try to talk to anyone else, but she wasn't upset, not exactly. We asked how she did, and she gave a thumbs up. She then asked for more tokens and we sent her back into the mix. After a while, I slipped into the arcade and hung back in the shadows. I just wanted to see how she was doing.

Schuyler wasn't interacting with anyone. She wasn't trying to connect. Whatever happened in the laser tag room, it convinced her to retreat back into her private world. I watched her play games, alone. But again, she wasn't dejected. She played a motorcycle game until she was out of tokens, and then she came to find us. When she saw us, she gave us a little smile.

"Did you find any friends?" Julie asked her, even though I guess we already knew the answer.

Without really looking at us, Schuyler just said, "I'm fine." She repeated it a few times.

Her tone suggested that she didn't want to talk about it, so we didn't. We took her outside and played some miniature golf, and the evening ended as a family outing. After the three of us got away from everyone else, she perked up. She said she was fine, and she meant it.

Schuyler wants to be like everyone else so much, and it breaks my heart. I see how hard she tries to make friends with her neurotypical classmates, and I see how they walk away from the effort. I don't think they're mean to her, not exactly. Maybe they just don't know what to make of her, like so many before. Maybe they aren't sure yet if it's cool to be friends with the strange girl. I don't know.

I've shamefully confessed in the past that I often don't care much for neurotypical kids, and I'm not always much better with their parents. It's tricky, because we really do stand apart in so many ways, and when I see what their worlds are like and the (to me) alien obstacles they face, I have to really fight off resentment. Is that awful? I think it must be.

I watch Schuyler's neurotypical classmates walk away from her and I think "Wow, random NT child, you just missed a shot at getting to know the one kid in the room who is truly unique." I feel like if the rest of the neurotypical world would just stop and try, they'd discover a friend like none they've ever had before, and their lives would be transformed by Schuyler, as mine has. There are a handful of people in the world whom I would say have really gotten to know Schuyler, rather than just the idea of Schuyler. They've stuck with her for the long haul. And I think it's fair to say that every one of them feels enriched by the knowing of her.

But kids don't think like that, not at this age. A lot of adults don't either, actually. A lot of people are missing Schuyler, missing out on the chance to enter into an authentic relationship with her, on her terms and in ways that make her happy and make her grow. Well, school's just started. I think perhaps they'll catch on.

And so she retreats, head held high, and she plays alone, or with us. Mostly she plays alone. She doesn't seem happy about it, not exactly, but she does seem to be at peace. Schuyler has a back-up plan, it seems. Her world may be a little lonely, but it's cool. She's cool, too cool to wait around for admittance to a world that is frankly a little grey compared to the one she constructs and reconstructs.

We talked this evening as she got into bed.

"Do you like school?" I asked her.

She nodded her head and said, "A little." She held her fingers slightly apart.

"Are you making any friends?"

"No," she said, but then changed her mind. She held up two fingers. Schuyler has made two friends, or so she says. I met one of them this morning at her Miracle League soccer game. He's in her special ed class at her school. He's impaired, but even without clarity of expression, he made it clear that he genuinely likes Schuyler.

"Are you happy?" I asked her.

She gave her little secret smile and said it again. "A little."

I don't know how happy Schuyler is, exactly. Not all the time, anyway, and certainly not when she finds herself standing alone, as she does so often these days. But she seems determined to keep moving. Not like a shark, exactly, because she's easily the least predatory person I've ever known. Schuyler keeps moving like a hummingbird. She is always in motion, always searching for the prettier flower, the better place, a happier world with sweet nectar and loyal friends.

Hummingbirds don't seem strong. They're fragile, but they never stop. And in their perseverance, we see their genuine strength.

August 31, 2011

"Have you ever found a term for our super kids that doesn't piss you off Robert? Since there are times when we need to call them what they are (Special needs, Differently-abled, handicapped, whatever)."

It was a fair enough question, although it started from a false premise. I don't believe I've ever stated that I "hated" any identifying terminology, aside from the word "retard", and I hardly think that's exactly crossing the line into oversensitivity. The above comment was made in response to a joke I'd made about the term "differently abled". Most of us who spend time in some way in the world of disability tend to engage in a little dark humor; some very pointedly do NOT. I made a joke about "differently abled", the same one I've made before about how it sounds to me like we're describing toddler superheroes ("I can fly!"), and it pushed someone's buttons.

Which is fine.

It's fine because we're not all the same, we're not even close. We call ourselves a community, but as I've pointed out before, we don't actually agree on all that much. We don't agree on terminology. We don't agree on whether special needs kids are better off in segregated special education classes or in total inclusion, or something in between. We don't agree on cochlear implants or vaccines. We don't agree on whether kids with developmental disabilities need as much help as they can get in order to try to make it independently, or if they're fine just the way they are, or if they're fine just the way they are and yet should somehow be able to live independently in this rough world. We don't even agree on who gets to claim membership in this "community".

So no, we don't agree on much, and again that's fine, because all of our worlds are profoundly far apart. Creating a real community with common goals might just be too much to expect. I can see that now.

As a neurotypical parent, there's only so much that I can expect to understand about Schuyler's internal world. That is equally true, however, of even the world's most experienced educators or the most brilliant doctors and therapists, and it's true of observers with chronic conditions and of self-advocating persons with unrelated disabilities like autism. It's particularly true of those who have never met her, but it's often true of family members, too. Schuyler's inscrutability is true of those passing-through people who meet her once or twice, whether they realize it or not, and of all but a very few close friends (and they know who they are, I hope). Perhaps other kids with bilateral perisylvian polymicrogyria might have some insights, but, if you'll excuse the phrase, most of them aren't talking. And even if they were, fancy medical types who Know Such Things have declared that Schuyler's particular manifestation of BPP is very likely unique.

So perhaps she is ultimately unknowable, but Julie and I don't accept that, and shame on us if we ever did.

It's a foggy world, and we try to enforce some kind of order on it, because one of the more disquieting aspects of disability is the chaos, the unknown. Kids like Schuyler experience the world very differently from neurotypical children. Sometimes they are unaware of this difference, but others know it. They know it, and like Schuyler, some of them push back against it and try to fit in, try to pass even as we try to convince her that she doesn't need to. Well, try to convince ANY eleven year-old girl that she doesn't need to fit in with her middle school classmates and see how far you get. But other kids who understand that they are different, some of them similar to Schuyler and others with disabilities but entirely UNlike her, they reject the impulse to fit in. Some don't even feel that impulse at all.

Parents of kids like Schuyler also live in a world of chaos. We struggle with the push and pull. We're responsible for our children and yet we're making up the rules as we go along, rules which disintegrate like cigarette ash when circumstances dictate. As I said recently, we stand astride two worlds, that of the neurotypical (which we try but fail to educate about our kids) and of the disabled (which we can try to understand ourselves but can only do so from outside, as the most interested of all interested parties). And our dirty secret is that in standing with a foot in each of those worlds, we don't actually fit into either of them very well. As time goes on, we fit less and less, not more. But through entering into authentic relationships with our broken children, we do achieve a kind of understanding, and we are enriched and enlightened by the experience, so in the end, we are richer for it. It's a tough life, but we're privileged to be a part of it. Sometimes we find a little peace.

I know, by the way, that I lost a few of you there when I said "broken". And once again, that's fine. Of all the terms I have used over the years, that's the one that has earned the most comments. But here's the thing. Those comments have always, ALWAYS, been pretty evenly split between Team "How Dare You" and Team "That's It Exactly". More importantly to me, I've heard from quite a few members of Team "'Broken' Is How I Self-Identify". So I keep using it, because it describes what I see and experience with Schuyler, in a way that holds equal measures of pragmatism and hope. If Schuyler ever asks me not to use it, I'll stop.

More and more frequently, I find that our fragmented and underpowered community trips itself up on terminology. We establish the words that work for us, we insist that others use our language, and we fly our Flag of Offense when we are denied. I guess that applies to the whole "R Word" debate in some ways, although I still feel that if you are adamantly defending your use of a word that is so widely accepted as derogatory and which makes persons with developmental disabilities into the defenseless butt of your ugly humor, you're probably not so much a Warrior for Free Speech. You might just be an asshole, and probably need to come to terms with that.

Having said that, I have a confession to make. I kind of wish I'd never written about the "R Word". I sometimes wish I'd obeyed the little voice that whispered in my ear that it wasn't a place I wanted to go. Not because I don't believe in the cause, because I do, very much. But I never wanted to get branded as someone who thought a word should be "banned", or that every time it was uttered by a dumb teenager or an entitled hipster or a sports figure tragically planted in front of a microphone, I would be expected to raise that Flag of Offense and charge into the fray. I just wanted people to understand the word they were wielding and exactly how many people were hurt when they used it, even as my own understanding of its power was limited to my own experience as a parent and someone who loves Schuyler ferociously. It's a battle worth waging, but I'm not sure I was ever the right person to take up the cause. I don't know. I'm sorry I did, but I'm glad I did, too.

Not every squabble over terminology is so clear cut as "Don't call people retards, seriously." There are many ways to approach the issue of word usage, I suppose. We could insist on the use of People First Language, for example, but despite what you may hear or read (and GOD, you will read the claim if you consult Dr. Google even a little), People First is NOT universally accepted. I've written about my own negative feelings concerning People First, and there are others who have written at length, including many persons with disabilities. People First Language is a well-intended concept, and it works for a lot of folks, but where I believe it fails is in its insistence on universality.

Truth is, there is no universal perspective on disability. We can't even agree on what to call our kids. The special Toys-R-Us catalogue that I was discussing when that earlier comment was made referred to our kids as "differently abled". And if that works for you, that's fine. (How many times have I said "that's fine" already?) I don't feel like Schuyler is differently abled, though. She doesn't have abilities that are different from anyone else's, not exactly. She uses a speech device and employs some sign language as needed, but they're not inherent abilities that have organically grown out of her disability. Those are skills she's picked up by necessity, and she's not much of a prodigy at any of them. She uses them well enough to suit her needs, and that's enough. Her abilities are purely human, and some of them are broken. She can't talk, much less fly. But she can communicate, and she works harder at it than I do. Or you, for that matter.

She's not differently abled, but she does do things very differently, and that's what ought to be celebrated. Schuyler began with no verbal communication, so she developed her own manner of expressing herself, and that manner is extremely physical. Schuyler doesn't speak like you or me, but she communicates in her own perfectly Schuyler way. She verbalizes as effectively as she can, and sometimes it's not bad at all. But she also touches, she mimes, she hugs and hangs onto her loved ones. She invades the "personal bubble" of her classmates, much to their consternation, which is an issue we're working on. It's hard, though. Schuyler tugs at you insistently when she wants to show you something. Perhaps if she had the voice, she would just tell you about it instead. But most times, I'm happier to have her pull me, show me, to express her love and her happiness with hugs and kisses and imploring looks and flappy hands and her goofy laugh. Most times, I think maybe words alone would be boring.

Is Schuyler "differently abled"? Is she "disabled"? The hated-by-all but used-by-all "special needs"? "Broken"? "Neurodiverse"? Does it make a difference what she is? Do the inadequate words we choose really matter all that much as we try to grasp the imperfections that make up our loved ones, or our very selves? Yes they do, and no they don't. And we have to find a way to be okay with that.

August 27, 2011

Describe the differences between a transverse wave and a longitudinal wave.

If our Sun were a high mass star, what would be the eventual outcome of its life cycle?

Essay question: What would happen to our body's absorption rate of the intestines if villi had no microvilli?

There are a lot of things in this world that I do not know for sure. I'd say that most items fall under that category. So here are a few of those many things that I do not know for certain.

I can't say whether or not any of the above topics, which came home in Schuyler's classroom notes this week, would be within her grasp if she'd had a better mainstream classroom experience in the past, particularly last year. I can't claim that her mysterious and troubled brain would have the capacity to make sense of the material that she is now being handed in middle school if things had gone differently in her last few years in elementary school. And I can't say with any degree of certainty if things would be any different for her if the school district diagnostician hadn't informed her entire IEP committee two years ago that she wanted to retest Schuyler's IQ in order to have her labeled as MR, the range that she anticipated as the result of that test. I certainly can't state definitively that just making that observation subsequently informed, however subliminally, the way Schuyler was taught after that meeting.

What I can say for certain is that Schuyler's position in her mainstream class last year appears to have been akin to that of the classroom hamster. She was cute, she was friendly, she was tidy and she was helpful to the teacher. Remember, that was the extent of that teacher's evaluation of Schuyler's academic progress at her IEP last spring. Nothing about how Schuyler performed academically, and certainly not a word about strategies for teaching her. I don't know if there even were any strategies in place. If so, they appeared to be a trade secret.

And you know me. I love hamsters. I just sort of thought I was done raising them.

So that's the bad news. Here's the good news. Schuyler has all new teachers now. None of them were there two years ago when the diagnostician came right out and said that she believed Schuyler fell within the MR range and planted that seed. They'll find out soon enough that Schuyler isn't going to wax philosophical on transverse waves any time soon, but they won't have the whisper of "Don't bother, she'll never be able to do that" in their ears. And she has a special education team leader who appears to believe in Schuyler and whom I believe will advocate aggressively for her.

I don't know much about the outcome of the Sun's life cycle, either. I'm more concerned about the life cycle of my daughter. Its quantity, and most of all its quality.

August 16, 2011

So there we were, the three of us, in Target with the school supply list from Schuyler's new middle school. There weren't any particularly horrific items listed (no $1300 marimbas, for example), but one item gave us pause.

The scientific calculator.

It wasn't terribly expensive -- about ten bucks -- but we have a pretty good idea of what Schuyler is capable mathwise. We also knew that Pinkessa, her speech device, has a scientific calculator on it. We had a pretty realistic sense of how frequently this ten dollar scientific calculator was likely to ever be used.

And we bought it anyway.

In the end, it was an easy choice, once we talked through it a bit. We'll burn ten dollars rather than try to reconcile being the parents who decided that our daughter will never be capable of using the same calculator as her classmates. We'll spend that money that we could certainly use elsewhere so that Schuyler has the same calculator as everyone else, rather than the one on her speech prosthesis, the device that gives her a measure of expressive freedom but also reminds the world "I'm broken."

Sometimes overbelieving means spending money for a principle, one that says Schuyler should start off the year with the same tools and the same possibilities as everyone else. It's the same reason we politely declined the school's offer to give her a special locker without a lock on it, despite the trouble she had with the one that was assigned to her when we tried it at orientation.

She begins middle school next week, and I'm terrified for her. I have less faith in the decisions we've made for her that led up to this point than ever before. The fact that I'm even writing about this might be a good indication that I'm overthinking as well as overbelieving.

Well, anyway, there it is. Schuyler has a calculator now, one that those of us who know her best can scarcely imagine her using. But it'll be there, sitting in her bitch of a locker, if she needs it. We can do that much for her.

August 15, 2011

As I mentioned last week, I was privileged to speak to the BlogHer '11 Special Needs Mini-Conference in San Diego. If you'd like to read what others have to say about it, there's a page at Support for Special Needs where a number of blogs are listed. I'll keep my own comments brief since I was a participant and probably ought to keep the "Gosh, I was swell!" remarks to a minimum.

(Incidentally, there's also a transcript of sorts, but be warned: it reads VERY oddly, like something translated into another language -- Martian, perhaps -- and then back into English. I sound as if I suffered a head injury shortly before the panel. To the best of my recollection, I did not.)

I will say that my fellow panelists, Aurelia Cotta and Shannon des Roches Rosa were amazing. Both were poignant and intelligent, and happily made it a bit more difficult for me to speak intelligently. (If Aurelia was the heart of the panel and Shannon the brains, I guess I was the mouth. This will come as a tremendous surprise to exactly no one.) I keep hearing rumors of a soon-to-be available podcast, which I will post if such an animal actually steps out of the woods in the near future.

These kinds of conferences serve as important sources of information, as I've learned over the past few years. And this one was no exception. But I think the real value of the Mini-Con, especially for someone who has never attended a gathering like this, can best be measured in the unexpected sense of community they find. There really is strength in numbers, but only if you have a real understanding of exactly how many people are in the same boat with you. The crushing sense of isolation represents an almost universal experience for special needs families, and it really can be the thing that ultimately destroys our spirits. Something like the Mini-Conference gives us all a chance to share experiences and stories. On a visceral level, it gives us the chance to simply occupy the same space, to breathe the same air as others who well and truly get it. It's impossible to quantify just how powerful that experience can be, and how deeply it can change how we approach our lives and the lives of our kids and loved ones.

Advocacy begins in places like this. Disability advocacy in particular starts small, in communities based on specific diagnoses. Those communities grow, but not equally, and even the larger one are, by their very specificity, limited in what they can accomplish. I have stated, both here and in public appearances, that I believe the fight for disability rights, particularly in the hearts and souls of our typical fellow citizens, will constitute the next great civil rights movement in this country. And I believe that, with all my heart. But for that to happen, all of our little communities of need will have to become a unified group. We must embrace the idea that the rising tide really can lift all our boats. More to the point, the retreating tide can and very probably will leave us all stranded in the mud.

In looking for a way to create this unity, it makes sense to look for organizations who are already in place and already have a structure and a reach that can be utilized. Special Olympics has that structure, but I'm not sure they are a good match for the strong, entitled and impolite brand of advocacy that I believe will be necessary. Special Olympics focuses on a very specific and very positive message, and I doubt they want to stray very far from that. Which makes sense, honestly.

I think BlogHer might be a better fit, honestly, and I sincerely hope they are willing to keep moving forward with us. They provide an excellent and extremely high-profile platform for our advocacy, and I think we grant them a measure of depth and gravitas that serves them well. I am hopeful that a meaningful partnership will continue to build with BlogHer.

A hashtag grew out of the post-BlogHer discussions: #moreincommon. It also serves as a mantra for Support for Special Needs, the idea that as persons with disabilities and their families, caregivers and advocates, we have more in common with each other than that which separates us. I am obviously on board with that concept.

But I'm going to suggest that the real commonality isn't between all the different flavors of our very diverse disability community. It's between us and YOU. Those of you from typical families, those for whom all of this might feel like someone else's struggle, you are part of this, too. You simply must be. Our kids, our families, they need you to be. For an authentic sea change to occur in our society about how disabilities are perceived and how our children's humanity is recognized, you have to be on board.

And here's the thing. You WANT to be. This cause is on the right side of history. You want to be on the side that is marching on behalf of these folks, voicing the advocacy that so many of them are unable to voice for themselves. You don't want to find yourself, through apathy or outright opposition, with the modern-day equivalent of the mob with the water hoses and the bitey dogs and the clenched fists, shouting "No, you're a burden on us. Go back to the shadows." And we don't just want you there with us. We need you. This is your call to arms, too.

Entering into authentic relationships with those of your fellow citizens who seem to be the least reachable and who maybe even challenge your own feelings about what it means to be human, that's an opportunity to grow that you can't afford to walk away from. Our kids have a lot to gain by your participation, but if you are willing to really explore the things we all have in common, I promise that ultimately, you will have benefitted the most.

August 9, 2011

(Note: After some private and refreshingly non-shouty consultation with persons more familiar with the particular issues surrounding self-advocacy by persons with disabilities, I can see now that this wasn't a terribly well-written post. In particular, it lacked inclusivity, which, given how hard we've worked to create an inclusive environment for Schuyler, was a particularly obnoxious oversight on my part.

I hope that the larger point I was trying to convey isn't lost. Regardless, I apologize to those who felt slighted by my limited perspective. Like any other parent advocate, I stand astride two communities, those of the neurotypical and the disabled, and I don't always feel like I fit in or represent either one of them all that effectively. But I do try, and I will continue to try to improve.)

Well. Let it never be said that the entertainment world isn't committed to providing material to blog about.

From "The Change-Up", from Universal Pictures

Mitch Planko (Ryan Reynolds), about his friend's twin babies: "Why aren't they talking? Are they retarded? This one looks a little Downsy."

Let's dispense, for the moment, with the usual debate about freedom of speech or how comedy supposedly works or whether or not anyone needs to lighten up or pull a stick out of their butt. Instead, let's write a story. We can even pretend it's fiction.

Imagine a parent with a child who has Down syndrome. I actually have one in mind, a strong and positive writer whom I've become friends with over the past few years. But you probably have your own friends or acquaintances you can imagine.

So let's say it's a mom, one who spends her days, her years, taking care of a child, a very special child in every sense of the word. She loves this child the way most special needs parents love our children, which is to say, with equal parts gentleness and ferocity. She understands what the lesser of her fellow citizens of this rough world thinks of her kid when they see the evidence of disability stamped on a child's face but don't bother to look beyond. Perhaps she knows better than most how this attitude diminishes the shallow observer, not her child. Maybe she's found that peace.

Let's imagine that this mom likes comedies, and not just polite ones, either. Like most special needs parents, she probably engages in quite a bit of dark humor herself, the jokes and remarks made to her spouse or other special needs parents and no one else. She appreciates edgy humor, and she liked The Hangover, so when a new movie by the same writer comes out, she decides to take a few hours out of her weekend and go see it.

Perhaps her husband watches her child for her while she's at the movie theater. It would be nice if they could go together, but that's a luxury that's not afforded to every special needs family. If she's single (as so many special needs parents are; about 75% get divorced, according to a recent study), she's had to find a babysitter. This simple act for a typical family is one fraught with anxiety for the special needs parent. Qualified babysitters are hard to find; trust is even more difficult to build. Perhaps a member of her family will watch her child, but that's not a given, either. Many special needs parents have family members who don't get it, who have declined to watch our kids or who have made statements that we'd expect from fussy old ladies at the grocery store. (For me, it's always the old ladies, and it's always at the store.) So a family babysitter isn't a given, either.

But however it happens, our imaginary mom finds a way to go see The Change-Up. She's there, sitting in the dark, laughing at the movie, enjoying herself and pushing down the guilt, that feeling of abandonment that we feel when we dare to spend time doing something for ourselves. Perfectly reasonable, this time away, yet it's hard not to feel as if we've left our child unprotected somehow.

That feeling of leaving her child undefended suddenly swells when she hears it. "This one looks a little Downsy." Our imaginary mom is suddenly confronted with a room full of people, laughing right along with famous faces on the screen, in a multi-million dollar production worked on by thousands of people, approved by studio executives, writers, actors. All those cinema professionals, and none of them, NOT ONE, ever said "You know, we're making fun of purely innocent, absolutely blameless people here. We're making a shitty joke about people with disabilities, people who are brothers and sisters and sons and daughters of the moviegoers who are going to pay money to see this film. That strikes me as a dick move. Maybe we shouldn't do this."

Because this simple recognition of the absence of basic human dignity has not occurred to any of the decision-makers of this giant Hollywood production, our imagined mother sits alone in the dark, and she understands all over again, as if she could ever really forget, that a large segment of society, of the people she walks with and works with and attends church with right alongside her child, this chunk of society finds humor in her child's disability. They think her family's pain is appropriate as a punchline. This mom was right here with them, and does that make her complicit? She thinks maybe it does. Maybe she gets up and leaves the theater in the middle of the movie. Maybe she goes home to her child, feeling more than ever that her place is here, not out there with this great invisible THEM, the ones who will always place her and her child and her family apart.

But if people laughed, I suppose it works out okay when you do the studio executive math.

Again, I'm not asking you not to engage in this kind of humor. It's your soul, after all. You're the one who has to figure out what you're willing to do for a laugh, to fit in with the cool kids, and still sleep at night. But here's what I would like for you to do, if you're asking, which you're probably not.

If I ask you to close your eyes and imagine the kind of person who would casually use the word "nigger" to describe another human being, there might be some variation of the character that any one of you would build in your imagination, but I seriously doubt it would be someone you'd admire. I don't think you'd create the mental image of a person you'd trust your kids with, and I certainly don't think you'd imagine yourself.

When the greater part of society reaches the point where that exercise of the imagination would have the same result with the word "retard", we'll be on our way. That's what I'd like. It really is exactly that simple.

And "downsy"? That's vile. If you laughed at that, please go live in a hut somewhere, far far away from actual human people.

August 8, 2011

The sun is setting over the Pacific as my plane takes off for home. For the past four days, I haven't hated that sun. The San Diego sun has been pleasant, after all. The Texas sun that I'll see again tomorrow? It wants to kill us all. And it might just succeed.

I'm not going to write about the Special Needs Mini-Conference itself just yet. Those of us who participated in the panel and those who attended have been asked to post something next week, on the 15th, so I'll gather my thoughts and post a more comprehensive something something then.

But I did want to say a few words about the women I met at the conference. Given that it was BlogHer, it was almost entirely women I met, after all. (I walked into the conference center's men's room on several occasions and had it all to my princely self.) There were a few educators at the conference, but mostly, I met mothers.

I met extraordinary mothers.

I see how hard Julie works for Schuyler; I know as well as anyone the rocky pathways these mothers tread. As I met them and heard their stories, I found once again that some of them face monsters that make Schuyler's look like Cookie Monster. I met mothers who face daunting obstacles, mothers who spend their waking hours tending to and sustaining and comforting their beautiful, broken children. Some of them do this work alone, far too many of them, I suspect. I met mothers who have no time, and yet make time, mothers who struggle not just to save their children, but also to hang onto their own humanity, their own sense of self. I met mothers fighting to avoid being swallowed by their children's monsters.

These mothers have every right to be tired, to be ragged and sad and bitter. They've earned that right with their tireless advocacy and their unending work. They fear the future like I do, and that fear can be consuming as well. These mothers have a right to lose their faith.

But here's the thing. I didn't meet ragged, defeated mothers. I met strong women, charming and funny and positive, mothers who recognize not just the extraordinary challenges that their children present, but the enriched lives and unshakable loves that they enjoy for having those kids in their worlds. I spent the day of the conference with a continuous lump in my throat, listening to their stories and their hope and their unflagging overbelief in their kids.

Mostly, I want to thank everyone I met and everyone who attended the session. I felt like something real got started, something significant set in motion. For myself, I can only say that I feel inspired to do better, to be a better parent and a stronger advocate. And that's probably the very best I could ever hope for.

August 1, 2011

Eight years ago, a question turned into an answer. Hope turned to fear, and took a few more years to tentatively turn back into hope. Eight years ago, on a sunny day in New Haven, Connecticut, we were handed the rest of our lives. Eight years ago, the worst and best days of our lives began in earnest.

Eight years ago, Schuyler was diagnosed with Bilateral Perisylvian Polymicrogyria.

July 31, 2011

Over the weekend, I gave a speech, the closing keynote at the 2011 Angelman Syndrome Foundation Biennial Conference. It was a somewhat different kind of speech for me, more of a call to arms than I've really given in the past, and it was unproven. It seemed to go over well, and I hope I get the chance to deliver it again, but still. I wondered if it was appropriate.

If I'd been paying more attention to the whole debt ceiling debate going on in Washington, and in particular who was increasingly likely to get thrown under the budget cutting bus in whatever deal was made, I would have realized that yes, my approach was appropriate. Appropriate, and necessary. I have a feeling that a great many of us are soon going to find ourselves standing up and throwing rocks at giants.

Anyway, here's a short excerpt from the speech I delivered, the part that feels the most relevant.

Who's going to speak up for our kids?

This is the fight. These are the kinds of things that lurk out there, the attitudes towards a segment of our population that struggles for respect like no other. We simply must make significant cultural and societal changes and acknowledge that the struggles of those with disabilities are nothing less than human rights issues.

This is the heart of our fight, because it extends to every aspect of our children's lives, from the care they receive from the medical community to the seriousness they are afforded by their schools to the resources allocated to them by our political leaders. We've all seen it, time and time again. We've watched our representatives in government approach funding for disability programs and special education as if these are the nice things we can afford when times are good, like luxuries. They behave as if cutting these programs is reasonable, as if life will somehow wait for our kids until the good times return. More and more frequently, I hear these programs referred to as "entitlements", spat like a dirty word, as if our expectations constitute an unreasonable drain on society. And I'm not even talking about this from a partisan position. We've all heard political figures from both parties as they put our children's quality of life on the table while protecting their own special interests. I've come to believe that the term “independent voter” has come to represent someone who is equally appalled at what both parties are doing. I wouldn't be at all surprised to discover a great many of these appalled independent voters in the disability community.

What I have to say to you today is something that you already know. As parents and family members, as caregivers and therapists and teachers, we are the voices for our kids and our loved ones. We are the believers. So much of the world sees our disabled loved ones as powerless, so it is us, you and me, who must be the forces of change. We have to toughen up. We have to stop accepting scraps from the table of human decency. We must be the ones to lift the expectations of society. We have to be the ones to write the narrative of this fight in terms of civil rights, of basic human rights. Our voices must be strong, they must be entitled, and, on occasion, they must be impolite.

I believe in my heart of hearts that in terms of legal protection, in terms of funding in education and adult services and accessibility, and most of all in terms of a fundamental change in the empathetic and compassionate hearts of our fellow citizens, the fight for equality for children and adults with disabilities will be the next great civil rights battle in this country. But for that to happen, our loved ones, the ones who depend on us for so much else, they will need for us to stand up and raise those strong, entitled, impolite voices on their behalf. Are we ready to do that?

The short version is this: Marissa's Bunny tells the story of little Marissa, born in 2007 with a pretty terrible condition called West syndrome, or "infantile spasms". The blog is written by her father, Mike Wuerthele, and over time has garnered quite a following. A lot of people care very deeply for Marissa.

Last year, Mike turned to that caring community for help. He said he needed to raise money for surgery for Marissa. Thanks to the generosity of people in the gaming and disability communities, Mike raised almost thirty thousand dollars. It strikes me that the folks who helped Mike were very similar to those who helped Schuyler get her speech device six years ago. I suspect that some of them WERE the same people.

Here's where things get murky. Mike announced that he was starting the Marissa's Bunny Foundation, and with matching funds from his employer (who wished to remain anonymous), parents of kids with special needs could apply to receive free iPads for their children. This application process included submitting a great deal of extremely personal information. Forty parents were selected, and they were overjoyed.

Well, of course they were. In addition to the great need being filled, things like this are rare for parents of kids with disabilities. Generosity and good news are like buried treasure to these families. Enthusiastic parents began making plans with their therapists and school teams to incorporate these iPads into their kids' treatment and curriculum. Then they waited; many were notified that their iPads had shipped.

You know where this is going, I know.

As of this writing, not a single family has received an iPad. Mike has given a number of different stories, about shipping errors and legal obstacles and even threats made against him and his family, causing him to stop any shipments at the advice of his lawyers. He offered to refund donations to anyone who asked, but then claimed that his access to PayPal had been restricted. As more and more people compared notes, the extent to which Mike had been covering his tracks and telling outright lies became clear.

Finally, it all came down to this, an email sent yesterday to the "winners":

There are no longer any iPads. I've never had access to the matching funds I've been promised. Something along the way changed and I'm getting hung out to dry by my bosses.

As to my obliqueness about my bosses and the company I work for, If their identities ever got out, long ago they promised I'd lose my job, my insurance, and take us for everything we have making Marissa's surgery impossible to afford. If I keep my mouth shut and the fact that I got screwed never gets out in any way then I keep my job, and my insurance, and they've promised to pay for Marissa's surgery after we give everything we can.

My reputation is now screwed with the SN community but I have to be able to give Marissa the best chance for as close to normal as possible and will happily work under whatever conditions I need to. I'll dance with the Devil if it gets Marissa what she needs.

We're not going to fundraise any more. There won't be any more giveaways on Marissasbunny for special needs or otherwise. I'm still going to update with Marissa's surgical preps and that kind of thing, but that's all. Marissasbunny is going back to what it was before they got involved, back when many of you started reading. No more promotions, just Marissa and her brother's story.

There are the first words that are my own and not through a corporate lawyer since Thursday.

Regretfully,-Mike

There will be aftershocks to this story, I'm sure, especially since a number of people have apparently contacted law enforcement. As of this writing, Mike has said that he will be personally giving an iPad to a single winner this afternoon, with photos and no doubt some balloons and bullshit-flavored cupcakes. But I think this story is mostly over.

So what happened here? Was it all a scam, and if it was, to what end? No one paid for an iPad or a raffle ticket, but apparently there were pleas for matching funds funds from Mike's apparently mustache-twirling, comic book villain bosses. That request raised about $4400, funds that have now simply disappeared, along with other money raised for various reasons during the promotion. And the Marissa's Bunny Foundation? Does not appear to exist at all.

Does Marissa herself exist? Did that original almost thirty grand actually help her receive needed surgery? I'm going to step on my swelling cynicism for a moment and say that yeah, I believe that Marissa probably does exist and that Mike's original plea for money was legit. If Mike is anything like Julie and I, he must have been astonished at the generosity of a bunch of strangers on the internet.

Perhaps that opened a door to a dark place for him, a sense that "If it was that easy, then maybe..." Or maybe he was so desperate to be someone's hero that he kept this going to feed on the accolades and the gratitude for the work he was doing. Work that we now can see he probably wasn't doing at all.

I guess there are some lessons to be learned here, beyond the old "trust but verify". After all, when Julie and I and a good friend did a fundraiser to help buy Schuyler her speech device, those of you who donated took it on faith that we were telling the truth. As much as I've welcomed the democratization of the AAC process that the iPad has potentially brought to our families, this might just be the flip side. When you look carefully at Mike's whole "Free iPads for special needs kids!!!" promotion, it fails the sniff test on multiple levels. A speech-language therapist might have picked up on that, because an SLP doesn't exist on scraps of hope like special needs parents do. Situations like this serve as a reminder that regardless of the product or the therapy, we need as much professional guidance as we can get.

For me, however, there's a larger lesson here, a reminder that there is an even greater equalizer at work. People talk about the disability community as if we all gather at the VFW hall on Fridays and approve the minutes from the last meeting while practicing our secret handshake. And those of us who live in this world are treated like saints. "God chose YOU for this very very very special job!"

But our reality is one of blind selection, one of the few truly equal experiences in the universe. A very fair unfairness, perhaps. Membership in this community is open to Kennedys and Palins alike. We celebrate writers like Rupert Isaacson, but we struggle to make sense of someone like Arthur Miller. Many of us talk about how we're not special, we are just doing what any parent would do for their child, but we know that many don't.

Most of all, we like to believe that our commonalities provide a kind of sanctuary, and that when we hear a story like Marissa's and we meet someone like her father, we believe we can trust them. Because to face the alternative, to admit that a father would see his broken, beautiful daughter as a device by which to cheat his fellow special needs parents? That's a bitter pill to swallow. And we've forced down a lot of bitter medicine already.

I have a confession to make now. Honestly, I hope that there is no Marissa, or at the very least that she's a distant niece of Mike's, or a neighbor's kid. I find myself hoping that this is a full-blown scam, an attempt by an outsider to swindle families of kids with disabilities.

Because as bad as that would be, I find it worlds more troubling to imagine such a cynical act being committed by one of our own.

July 1, 2011

DAYTON, Ohio (CN) - Dayton police "mistook" a mentally handicapped teenager's speech impediment for "disrespect," so they Tasered, pepper-sprayed and beat him and called for backup from "upward of 20 police officers" after the boy rode his bicycle home to ask his mother for help, the boy's mom says.

Pamela Ford says her "mentally challenged/handicapped" son Jesse Kersey, 17, was riding his bike near his Dayton home when Officer Willie Hooper stopped him and tried to talk to him.

The mom says that "Prior to the incident described below, defendant Hooper knew Jesse and was aware that Jesse was mentally challenged/handicapped and a minor child."

[...]

"Jesse was charged with assault on a peace officer, resisting arrest, and obstructing official business."

However, "Jesse was declared incompetent by the Montgomery County Juvenile Court and the charges against Jesse were dismissed."

Jesse and his mom seek damages from the city and the two lead officers, for false imprisonment, false arrest, malicious prosecution, assault, battery, excessive use of force, infliction of emotional distress and civil conspiracy.

(Edited to add: Here's another article that gives the police officers' side of the story as well. Interesting to note that even if you were to take the cops' side as gospel, it still brings up some questions. Why would the cops behave this way even after being told, more than once, that there was a disability/communication issue? Is this an appropriate force level for a kid riding his bicycle the wrong way down a street? At any point, did the officer even try to take what would probably be minimal efforts to defuse the situation? Even knowing the police side of the story, I still think the mother could have been charged with several counts of "exactly what Rob would have done".)

That could be Schuyler. That could be any non-verbal but ambulatory kid with a developmental disorder. It could be your kid.

Officer Willie Hooper knew Jesse Kersey, he was already aware of the young man's disability. He knew, and yet he still did this. He knew, but he didn't understand, didn't extend basic human dignity to a young man who didn't understand and couldn't communicate to the officer's satisfaction. This doesn't sound like a mistake. It sounds like a value judgment, one that ultimately concluded that a kid like Jesse Kersey HAD no value.

Now, where would someone get the idea that people with developmental disabilities have diminished value as human beings?

All this week, on Twitter and Facebook and my blog, I've made a little noise wherever I can about Tracy Morgan's recent remarks about kids with developmental disorders, and I've had a few good discussions about the topic. But I've also been told that I need to lighten up, that the attention directed at Morgan is tiresome, that free speech includes immunity from personal responsibility or simple human decency. I've been told that jokes about people with disabilities are harmless.

When I talk about a societal narrative fed by the likes of Tracy Morgan and members of the Dayton Police Department and the entitled hipsters loudly demanding their freedom of speech when taken to task for calling someone a retard, a societal narrative that re-enforces the idea that the least powerful among us are fair game, THIS is why it's important.

And when parents and advocates stand up and protest this narrative, we're not doing so to get a ride on "the Tracy Morgan free publicity train", as comedian Rob Corddry suggested on Twitter this week. We're not opportunists, looking for some sort of self-promotion. We're not pleased that Tracy Morgan gave us a chance to make a larger point, and we're not happy to shock the world with the story of Jesse Kersey, or any of the others who have been denied their dignity because they have the audacity to be broken, to be less than perfect, to be different.

We would love to live in a universe where our fellow citizens of the world heard vile remarks or read of monstrous deeds and stood up to say that we as a society are better than this. We'd like public figures and groups besides parents and the same advocacy groups like the Arc or Special Olympics to say "Well now, I may not have a dog in this fight, but that right there? THAT'S fucked up." We would like for the denial of basic human dignity to be something that distresses most anyone, outside those of us in the disability community. We'd like to feel like we have more choices that either keeping our mouths shut or standing on a hill, shouting into the wind and hoping we don't get hit by lightning.

In my book, I wrote about the island I dream about, the one where we'd go to live, just our little family, where a protecting ocean would shield Schuyler from the likes of Tracy Morgan and Officer Hooper and a depressingly large segment of society that sees her as a punchline, or worse. I admitted that I knew it was wrong, but it was still a very happy fantasy.

After this week and the conversations I keep finding myself having and the walls I keep throwing myself against, I would take Schuyler to that island in the time it would take to pack her sock monkeys and get to the airport.

June 28, 2011

It's been almost two months since I gave my own perspective on the so-called "R-Word" (May 5, 2001 - "Just a Word"), and an interesting conversation has grown out of it. The discussion gave me the opportunity to clarify my position a bit, and to also navigate some of the grey areas in my own thinking.

The most important point for me was that I'm not looking for some kind of ban on the word, which is a silly idea anyway. I don't want to stop people from saying that someone or something is "retarded" if they really want to. If someone feels compelled to use a word like "retard", I think they should absolutely do so, because I want to know that about them and the kind of person they are. And as a person who once used that word fairly frequently, even in my writing (and as recently as four years ago), I felt a little like Nixon going to China. If I can change because of my own experiences with my daughter and the people who would use that word on her, then maybe other people who have greater sensitivity than me can do it, too.

And honestly, I also want to give them a chance to convince me. I want them to understand exactly how powerful a word like that can be, and if they DO get that and still think it's the word they need to use, then I'm all ears. I'm probably not going to agree with them, but I don't think I'm going to change anyone's mind if I try to silence them from saying what they want to say.

Mostly, I want them to NOT want to say it in the first place. I want the word "retard" to taste bad in their mouths.

I was asked to join a Facebook group the other day, one that takes a fairly hard and unforgiving line against any use of the word "retarded" in the entertainment world. Ultimately, I declined. I understand what they wanted to do, but when someone like Lady Gaga or even President Obama slips up and makes an insensitive remark, it's their reaction and the steps they take to make it right that I think provide a chance for real change. You learn a great deal about a person's heart by how they react when they screw up. The word "retarded" has become such a part of the popular culture, and prying it out of the vernacular is going to take some patient work.

Furthermore, I couldn't get behind the group's blanket boycott of television shows and films with characters who use the word. When a celebrity makes a stupid remark in public, I am all for holding them responsible. But what about when a writer uses a word like "retarded" in a line of dialogue to help create a realistic character, like when portraying a snotty teenager on "The Killing"? (The most offensive thing about that show was the season finale; don't even get me started.) Or if the word is used by despicable characters in order to make a larger point about society and the entertainment industry, as in "Tropic Thunder"? As a writer, I have to respect that nuance, and the right of other writers to use ugliness to draw larger pictures.

There's a saying that if the only tool you have is a hammer, then every problem starts to look like a nail. I don't easily take up that particular hammer.

So there are grey areas, and there are honest mistakes that can be remedied, and in those remedies, further awareness of the power of words can be increased in society. If we attack every single utterance of "retarded" and refuse to accept the apologies of those who offer them, we're going to be using our very limited resources to play a gigantic, losing game of Whack-A-Mole. In most cases, we need to educate, not punish.

Because sometimes, there are battles that are truly deserving of every ounce of outrage we can muster. There are people who use the word "retarded" deliberately, not with the slip of a tongue and not wielded satirically, but with cold, cruel calculation, for the purpose of mocking children with disabilities. For easy laughs.

After another brief flirtation with a woman in the crowd, Mr. Morgan turned sincere. "I love you all so much," he said, "did I tell you that tonight? I've been in trouble lately, and this was big for me that you all came out."

Whatever he had been accused of, Mr. Morgan said, "I don't have that in me. I believe gay, straight, anybody, everybody's supposed to be happy in this world, man."

Resuming his routine, Mr. Morgan warned his audience, "Don't ever mess with women who have retarded kids." As groans and cries of "Uh-oh" were heard, he continued, "Them young retarded males is strong. They're strong like chimps."

Finally, he concluded with a bit about his alleged teenage romance with a girl he described as "a cripple" with a prosthetic arm, a mechanical larynx and a portable dialysis machine.

Read it again.

Tracy Morgan didn't make a mistake, any more than his recent and vile anti-gay remarks were an accident. It wasn't an "oops" moment. He couldn't have thought for a moment that no one was paying attention, not on the heels of his previous homophobic remarks. It wasn't off the cuff. Knowing the risk he was taking, Tracy Morgan deliberately made a horrible, stupid and premeditated joke about a specific group of people whom he concluded were mostly powerless to push back.

I'm going to cynically suggest that he may very well have concluded correctly.

One of the most surprising defenses of using the word "retarded" as an insult that I've heard, on many occasions, is the idea that it's okay because a great many of those in a position to be hurt probably don't even know they've been insulted, and can't really respond meaningfully. (If you truly believe that makes it better and not worse, I have two words for you, and they're not "Happy Birthday".) But that argument might actually speak to an ugly truth, at least indirectly. In the entertainment industry, I suspect that the degree of the offense is largely determined by the power of the group being offended. Power as defined by purchasing power, political power, the power to organize and fundraise, the power to withdraw financial support, the power to boycott. The power to be heard.

Who's going to speak up for "retarded kids"? Parents? Kennedys? Is NBC going to risk firing their 30 Rock cash cow over this? Will Tina Fey and Star Jones express any regret for their earlier defense of Morgan's "good heart"?

If you've read my thoughts on use of the word "retarded" and wondered where I draw the line without nuance or shades of grey, here you go. I know he's not alone in the comedy world, but he's got a bigger platform than most. Tracy Morgan just set my gold standard for "Don't say that."

I hope I'll need to update this post to report on real consequences as a result of Tracy Morgan's attack on children with disabilities, probably the most powerless among us. But I'd be lying if I said I thought that was going to happen.

THIS is the fight. THESE are the kinds of things that lurk out there, the attitudes towards a segment of our population that struggles for respect like no other. We simply must make significant cultural and societal changes and acknowledge that the struggles of those with disabilities are nothing less than human rights issues.

Sometimes it's hard to identify the battles that are worth fighting.

Sometimes? Not so hard.

-----

Update, 6/30: Well, more of a non-update. The Associated Press put it succinctly.

June 24, 2011

I've described how Schuyler tries so hard and almost succeeds in being just like everyone else, but within that "almost" lies an unhappy and oft-repeated story. That's never more true than in her relationships with neurotypical kids.

I'm going to just say it. I feel like this is probably my fault, mostly. There was a time, back when she was much younger, that Schuyler lived in a very internal world. In the months before and a year or two after her diagnosis, we were at a loss as to why she was so very very different, so very Schuyler. It was unclear just how much of her remoteness and ethereal quality was due to her lack of communication, and how much was from something more. More serious, more difficult to identify, more developmental in nature.

When Schuyler was old enough for school, and especially after we began looking for news ways for her to communicate, we made a choice, and it probably wasn't even a conscious one, either. We didn't worry about, or even consider, whether she would ultimately be happier simply growing up to be who she was, without forcing her into the world. We believed, as we continue to believe, that Schuyler had the ability to learn and to adapt and to one day live independently in the neurotypical world. Whether or not that was actually the most desirable goal never occurred to us.

Now, though, I'm not so sure. Did we push Schuyler to work hard, and to wish hard, for something that was ultimately going to be out of her reach, even if it is just out of her reach? I don't know. I still feel like anything less than a total commitment to the fight for inclusion, both academic and social, would be cheating Schuyler, but I'm no longer certain. I once thought that Schuyler's transition from her beautiful but mostly opaque inner place to the imperfect and sometimes cruel world of the rest of us was a mostly positive thing. She was smart enough to do it, she was ambulatory, she was socially precocious. If she could get close, what could be better for her? If Schuyler could become mostly one of us, surely we could all make up the difference.

Now I'm terribly unsure. I think perhaps I set her up to fail.

What do you do with a kid like Schuyler? More to the point, how do neurotypical kids roughly her age process who she is? She falls into a very specific crack, and it's no doubt a confusing space for typical kids to understand. I think most of them understand how to approach a kid with more severe (or perhaps simply more apparent) disabilities; kids are learning compassion from their families and teachers (or at least we hope they are), and they put that to good use with their disabled classmates. Likewise, I think they know how to navigate relationships with kids whose impairments are more superficial in nature. They know how to reach past those obstacles and reach a kid like themselves, and build relationships with those modest accommodations in place.

Schuyler continues to present a middle place, a child who looks and plays just like them, but for whom those standard rules of human interaction don't apply. It's not entirely, or even mostly, about communication, either. Schuyler presents as much younger, and frankly much stranger, than she appears, and it doesn't help that she has grown into a very tall girl, one of the tallest in her class. Schuyler can be very hard to understand in her entirety.

Grown-ups get this, and if you asked Schuyler to list the people she loves most in the world, almost all of them would be adults. But for kids, even those who know Schuyler well, she's confusing. She's happy and she wants to be their friend, but she's inexplicable and unable to play by the rules that they've been learning. It's not just communication, although that's part of it. It's also that she doesn't fit; she's not age-appropriate in some ways but ahead of her years in others. It's not anyone's fault, certainly not the typical kids who push her away. She's simply broken in ways they don't know how to accommodate.

This is inclusion's dirty little secret. It's a story I have heard from more parents than I can even number.

We've been having conversations with Schuyler this afternoon, trying to help her understand. How do you explain to a kid like Schuyler that because she's different (which she very much knows that she is), sometimes other people don't know how to be her friend? How do you get her to see the difference between a kid who doesn't know how to play with her and a kid who is being mean?

I'm not sure if she understands. She moves on quickly, so it seems like she's blowing it off, but then she'll mention some slight at a later time, perhaps days or weeks after. That's when it becomes clear that she carries all the little hurts with her, as if stuffed in her pockets. She doesn't obsess about them, but she doesn't forget.

June 17, 2011

This Father's Day weekend, I'm going to take it easy, maybe hang at the pool with Schuyler, get some barbecue with the fam on Sunday, that sort of thing. Not so much with the sitting at the computer, hopefully.

Here's some interesting news as well. I'll be speaking at the Special Needs Mini-Conference at BlogHer '11 in San Diego in August. So stalkers and killers, go gas up your windowless vans and make room in your freezer for my head. I'll be easy to pick out of the crowd, I suspect.

June 15, 2011

MATTHEWS, N.C. -- The mother of 12-year-old Jackson Helms said her son was removed from Elevation Church for being a “distraction” during their Easter service on April 24.

He has cerebral palsy.

She was supposed to meet with the church leaders to discuss what happened, but the pastor canceled the meeting when he heard she had contacted Channel 9.

We spoke with Jackson’s mother, Kelly Helms, today, and she says each day is a little tougher for Jackson than it is for normal children.

“Easter Sunday he got all dressed up, got ready to go, no small feat with a kiddo like him,” she said. But, right after the opening prayer inside Elevation’s sanctuary that Sunday, Helms said Jackson voiced his own kind of “Amen.”

“We were very abruptly escorted out.” Kelly Helms said.

Helms said a volunteer at Elevation took her and Jackson to the lobby to wait out the remainder of the service.

Helms said it was not a good feeling but saw an opportunity to contact the pastor with an offer to start a ministry for special needs children. She says the idea was rejected.

When Eyewitness News went to Elevation Church, an employee told us they focus on worship and not ministries.

But Elevation Church officials emailed Eyewitness News Wednesday night after our story aired. In a statement, a spokeswoman said "Everything we do is about ministry. We focus specifically on our worship and children’s ministries – and we partner with many other ministries in Charlotte."

The church statement continued to say "...this young man and his family were not removed from our church. They were escorted to a nearby section of our church where they watched the service in its entirety.".

Earlier Wednesday, the church issued a statement that said, “It is our goal at Elevation to offer a distraction free environment for all our guests. We look forward to resolving any misunderstanding that has occurred.”

Even though the pastor canceled the meeting with Kelly Helms, he called the Mecklenburg County ARC, an advocacy group for the disabled, and asked for special needs training for his staff.

When Channel 9 told Helms, she said this was the answer to her prayers.

I suppose that as a reader, you have to decide what the story is here. Because it seems to me that there are a few things at work.

Is this a story about the loneliness and isolation of parenting a child with special needs? That's the first thing that jumped out at me. I thought of this family, looking for spiritual refuge and instead finding a kind of judgment and rejection. I wonder about this mother, if she wondered why God would reject her and her son. I think the feeling that God has abandoned your child and your family occurs to just about every special needs parent at some point.

Is this a story about yet another failure of Christian values put to the test? How would the members of this church answer their bumper stickers? "What would Jesus do?" Is Jackson Helms a child of God? Does he have the same value in the eyes of God as a child with full control of his body and the ability to express himself "appropriately"?

Is this a story about overzealous disability parents making unreasonable demands of the world around them? Should the rest of the congregation be forced to endure the distraction of a child with CP in their midst, making a noise that they are unaccustomed to? There are a lot of people in the comments to that story that say exactly that.

"It seems to me that the Helms need to be the ones to get some sensitivity training on the rights of others (non-handicapped). A disability does not trump the rights of the rest of us, sorry. [...] I haven't said anything negative about the disabled child. I also have compassion for him and hope, as his Dad noted, that Divine Intervention will cure his condition. The problem is with his Mom and her lack of understanding that his disability does not give her special privileges over the rest of us."

"Why do you think that you have a "right" to inflict your kid or your dog or your parrot or whatever on other folks?"

"A "special needs child" is really no more different that a newborn baby. Constant need 24/7 noisy when in needs etc etc."

"If it was a crying baby, old man farting, or some redneck lighting up a smoke you all wouldn't mind kicking them out. Just because a child has special needs and is a bit of a distraction does not give him or her the right to make others peoples time at church uncomfortable."

"He was treated no different than anyone else who makes noise during service."

But of course, he IS different. He has cerebral palsy. And that difference isn't cultural or religious, and it's not one that he asked for. Most of all, it doesn't change his value as a human being, or his need for spiritual enrichment. For me and for my family, church is not the place where that's going to happen; a story like this just re-enforces that conviction on our part. But for Jackson and his family, the Elevation Church was the house of worship where they sought that experience. The church failed them, and it failed Jackson Helms because of his disability.

Jackson was removed from the service after making a noise. A single sound. But the sound he made was a "non-typical" noise, and that noise was deemed inappropriate for a house of God. If you consider the story carefully, you'll see how that's what it boils down to.

You can decide what this story is about, but I can tell you what it's NOT about. It's not about someone being disrespectful or distracting. It's about a mother making other people uncomfortable with the mere presence of her disabled son.

The fact that it happened at all is terribly sad. The fact that it happened in a church? You decide what that feels like to you. I find it unsurprising. But that's me.

June 13, 2011

If today were a Saturday or a Sunday, the place would be crowded, mostly with brash teenagers loudly claiming their territory. But it's late, just before sundown so the heat is ever-so-slightly less oppressive, and it's a Monday. We almost have the pool to ourselves.

Schuyler swims. Julie and I don't, not today, although one or the other of us usually will. Julie has just gotten home from work, a job she likes but which is sometimes more stressful than it should be. When she's home, Julie has the weight of the world on her shoulders, sometimes money and sometimes her health or mine but mostly the constant consideration and work and concern for her broken little girl. She shouldn't require decompression after work, but fairness isn't a right and that's just that. Today was a good day; Julie doesn't swim but instead soaks up the last bit of sun. I sit beside the pool as well, reading a book. This happens much less often than I care to admit, to my shame.

Schuyler swims, mostly alone. Something has changed since last summer, seemingly at once. Schuyler has always seemed fearless, but the truth is that until this summer, she was never entirely comfortable in the water. In the past, she loved to swim, but always with a hand close to the edge. The moments when she went underwater were always followed by a few sputtering seconds of recovery, hands flapping and panic in her eyes. Last summer saw some improvement, but still. There were Issues.

This summer has been different, and without transition. The first moment she jumped into the pool, she was entirely comfortable, and fearless. Now she leaps from the high walls around the edge with abandon, in a position resembling nothing so much as a jumping spider, pouncing on its prey in tv slow motion. She spends as much time underwater as her lungs can handle. When she swims, she keeps her legs together and does what Julie calls a dolphin kick but which looks to me exactly like the mermaids she loves.

After years of trying, Schuyler has found her mermaid soul.

There is another person in the pool, a shy little boy maybe a year or two younger than Schuyler. His grandmother watches him and tries to convince him to talk to Schuyler. Schuyler is all for this plan as well and invades his space with enthusiasm, but the boy is hesitant. We've seen it before, often when Schuyler is paired with autistic children in school or at conferences. For kids who are timid or who have social anxieties, Schuyler is kryptonite. She is a shy kid's devil.

The grandmother asks questions, but of course the pool is a place of vulnerability for Schuyler, without her speech device to answer for her. Schuyler wants to give her name, but she can't, and really, it doesn't seem to matter to the boy. He doesn't want to be left alone, exactly; as Schuyler swims and plays, he approaches her slowly, fascinated but confused by her, which puts him in league with basically the whole world, myself included.

Julie and I could get up and walk around the pool to be near the grandmother. We could make ourselves available to answer her questions, the ones she has been shouting to Schuyler in the fleeting moments that her head is above water. But we don't. We don't even discuss it; it's not a team snub. When we discuss it later, we discover that we were on the same page. Maybe we came across as impolite. Perhaps we actually were rude. It certainly wouldn't be the first time I've intentionally chosen to be chilly to someone, and not even in response to some perceived slight. The grandmother didn't do anything wrong, and yet we both chose to let her sit in her own confusion rather then enlighten her as to Schuyler's... schuylerness.

It's not something I can complain about, because I've clearly made something of a career out of it in recent years, but we don't always feel like we need to explain Schuyler. I've been more aware of it recently as I've been reading Jean Vanier and Ian Brown. We've spent so much time and energy trying to integrate Schuyler, and it's always been something that she has wanted. To fit in, to make her way in the typical world, these have been Schuyler's dreams, more hers if possible than ours, even. The fact that we've been unable to do that in some significant ways feels like one of the areas in which I have failed her the most. There's a lot I've gotten wrong with Schuyler, but perhaps my attempts to help her "pass" are the greatest. I'm no longer confident that it was ever the right thing to do, although she has certainly worked hard to make it happen, the thing she's wanted more than anything else in the world. She's always been Pinocchio, but there's never been much of a Blue Fairy to help her.

But lately, I've thought a great deal about Schuyler's right to exist on her own terms, without the pressure of a world in which she almost fits, but never completely does. I'm not talking about giving up on integration, certainly not in school, but at times like this, sitting by the pool and watching her swim like a sea creature, totally in her element, I understand that Schuyler doesn't need to fit. She doesn't need to talk, and we don't need to explain why she does what she does and can't do what she can't do. She only needs to swim, and we only need to watch, quietly and with something very much like peace.

Schuyler finally figures out how to reach the boy. She climbs out of the pool and up onto the wall, and she leaps fearlessly into the water, splashing down in her angry crab position. She swims to the surface and then points to him, a gauntlet playfully laid down. He smiles, maybe for the first time since she noisily entered his world, and then he climbs out of the pool and takes his place on the wall. He cannonballs into the water, and when he breaks the surface, he hears Schuyler clapping for him.

And that's it. Whatever connection they've been looking for has been made. The wordless girl and the shy boy take turns leaping from the wall. When they take the air, their anxieties remain behind them. They don't know each other's names or what grades they are in or any of the other questions that the grandmother tried to ask. They're not here to talk. They're here to swim.

When we leave, they wave to each other. "See you tomorrow," she says, although I have no idea if he understands her. I suspect he might.